Tag Archives: Down syndrome

I’ve never been sure just who the girl in the party hat is — it’s changed, really, depending on the day. The truth is that my friend Deborah named the blog when she saw Amanda Blake’s wonderful print of a little girl in a polka-dotted hat. It was that simple. I wanted to call the blog Chocolate Dance Party, in honor of Sophie’s 5th birthday mix, but my friends convinced me that would be a bad idea — too dirty. Imagine the lowlife who would seek out a blog with such a name, they said.

Ah, but I digress. It’s been a year of digressions. But has it been more than that?

I’ve never been good at going back and looking at my old work, so I’m not sure. It’s been quite an exercise, this blog. In some ways it feels like it’s taken no time at all. But the seven laundry baskets in my bedroom overflowing with toys, papers and clothes say otherwise. And I honestly can’t tell you the last book I finished.

I said I’d try to write almost every day, and this will be my 288th post, so I guess that’s pretty good, going just by the numbers. I never did learn how to size photos or do links. Every time I considered it, I realized it was that or write another post. And I wanted to write another post.

That surprised me. I never thought I’d want to blog — I tell my writing students, “Don’t give it away for free!”

But the truth is that I haven’t been giving it away for free. Far from it. I’ve been paid handsomely, this past year. When I started this blog, I was so naive about so many things. And cocky. “Step aside, world!” I thought to myself. “I will blog about my child with Down syndrome! Surely no one’s ever done THAT before!”

Ha! There are so many out there doing it (hundreds? thousands?), and doing it better. And the ones I’ve found have become my community, my support group. I love to make fun of Twitter and mock myself for wasting time on Facebook, but the truth is that social media can be a pretty powerful force, and you can use it for good as well as evil.

It’s been a year. I can feel it. I feel old. My daughters’ grandmother died this year, as did my own grandfather, the family patriarch. I walked a half-marathon. John McCain came THIS close to becoming president. Barack Obama did. After threatening for so long, the journalism industry began its inevitable upheaval in earnest. I decided once and for all to stop highlighting my hair.

And Sophie completed kindergarten. When the school year began, she insisted on leaving the house each morning with a stuffed animal. Now it’s a Junie B. Jones book. They said she’d never write her name. She did that at the end of the first week of kindergarten. To be sure, her handwriting’s a nightmare, and she can’t read more than a few sight words in a Junie B. book. The truth is that she ends kindergarten still a head or two below her classmates — literally and figuratively.

I can’t pretend she doesn’t. Sophie will never be the same as these kids. She has exceeded all expectations this year — even those of Ms. X, who set hers high — but all you need to do is spend five minutes around her peers to know Sophie’s not really one of them and never will be, as high functioning as she is.

Don’t get mad at me for saying it; I just need to say it before you do.

When Ms. X told me she wanted Sophie to move up to first grade so she could be with her peers, I beamed. I thought that was so cool. It’s a product of the fact that I really don’t read much about Down syndrome, even to this day. It’s all an open, unwritten book for me, for better or worse. I didn’t realize the peer thing was a given — one of the rules — til I was talking one day with Sophie’s occupational therapist.

Yes, she told me, it’s a good idea for Sophie to matriculate with her peers. After all, the social aspect is most important, she explained. Special ed kids are expected to fall behind, so it’s okay to move them up even if you know they’ll fail increasingly — that’s what special ed services are for. Sophie will fall behind more and more, but she’ll get extra support outside the classroom and that will allow her to stay with her peers.

As I read over what I just wrote, I’m not sure the part that upset me will come across to you. There was just something so clinical and matter of fact in the way the OT said it, as opposed to the way Ms. X said it. For Ms. X, I think, it was a moment of discovery, a happy thing — Sophie has friends! She should stay with them! For the OT, it was just another day on the job. (Not that I don’t love the OT — I do.)

Ah, Ms. X. My eyes fill with tears as I write this. Tomorrow, the security blanket really does get ripped away. It’s not like I’ll never see her again — she’s going to tutor Sophie this summer, we’ll have trips to the pool, even the occasional poker game. And I love Ms. Y, I really do. She’ll be a super first grade teacher for Sophie. (Assuming we get her, wink wink.)

But it will never really be the same as it was this year — this awesome, inspiring, terrifying year. As I wrote long ago, kindergarten was the great equalizer. Sophie came to it knowing so much, if only by rote. First grade will be diferent, no matter how well she’s done in kindergarten. I know that. She doesn’t, and that’s a very good thing.

Sophie. If only I could be Sophie. I’m not saying she doesn’t have her anxieties (how could a child of mine not?) but that 21st chromosome does a great job of tamping them down, if nothing else.

All of this is my way of saying, how can I stop this blog? To be sure, some things will have to change. GIAPH will have to stop reading like a bad imitation of the Nora Ephron movies I love — you know, the ones that track the character (usually Meg Ryan) through various seasons — dragging the Christmas tree in “When Harry Met Sally,” loving spring in “You’ve Got Mail.” I promise, dear reader, to quit ruminating on the holidays — quite so much, at least. We’ve been through them all, you know my position (I love holidays, or at least the merch that goes with them).

And I vow to push aside the seven laundry baskets of crap and unearth the Down syndrome Rubbermaid, filled with all the pop culture references I swore I’d discuss on this blog. I will do that, even though I can’t promise I will watch that documentary again about the man with Down syndrome who loves sex and wrestling.

I also promise to spiff things up, hopefully starting tomorrow. Links, properly sized photos — the works. If only to prove to myself I’m not such a tech dinosaur.

No matter what happens from now on, I will always remember this year. I’ve never in my life kept a journal or a diary. I’ve never tracked the days. I don’t regret not doing it before now, not really, but I’m glad I did it this past year. Maybe it’s the remnants of the flu (still!) but I got all nostalgic last night, trying to fall asleep. Ray offered to put the girls to bed, so I snuck into our messy room and wrote a batch of thank you notes for Sophie’s birthday gifts, and listened to Ray and the girls play way too raucously so close to bedtime.

For some reason, I thought of that song from Rent. OK, shoot me, yes, I like Rent. A lot. Along with the Beatles, it’s the one piece of culture (if you can call it that) that Ray and I agree on. I’m not sure if admitting you like Rent is as bad as admitting you like Cats (I don’t! I swear! Although it was the first show I ever saw on Broadway, at the Wintergarden. OK, maybe I did like it — at the time. I was young.) but I’ll admit it anyhow.

Yeah, I know that a lot more transpired for the characters in Rent in a year than has for me, this past year, but still, I got teary, thinking of the song “Seasons of Love.” Listen to it, if you can stand it. Here’s a YouTube link.

This morning the girls and I were cuddling in bed, and I was stalling, waiting a few more moments before starting our suddenly upside down day.

Annabelle is home sick; she woke up in the middle of the night with a fever that wound up being yet another bug that’s going around. That meant: cancelling school; making an appointment with the pediatrician; cancelling Sophie’s eye doctor appointment and letting Ms. X know she was coming to school earlier than expected– and Ms. X had her observation with the principal this morning and was probably looking forward to one less kid in the room, though she didn’t say it; calling the speech therapist to warn her that Annabelle is sick and she might want to stay away from the house this afternoon; calling my mom and sister to tell them we can’t play with the cousins tonight, very sad, since the cousins are only in town for a week; calling, emailing and texting my boss and assorted co-workers to say I won’t be at work; and cancelling a vet appointment — except both Ray and I forgot to do that, crap.

We were still in bed, none of that had happened yet, when Annabelle suddenly remarked, “I think Sophie will be a very good mom, even though she has Down syndrome.”

(A lot of conversations these days involve the phrase “even though she has Down syndrome.” I don’t know how much Sophie’s digging that; at first I thought Ray was crazy for saying it bugged her, but now I’m beginning to think maybe it is. Not today, this exchange was too quick.)

I thought about explaining to Annabelle (again — I could swear we’ve had that talk, or that Ray’s had it with her) that it’s highly unlikely, for assorted reasons, that Sophie will have kids. But I didn’t say anything. I just agreed that Sophie would make a really good mom.

“How many kids will you have?” Annabelle asked her.

Sophie thought for a moment and announced her decision with the triumph she reserves for — well, for almost everything.

I wanted to write about the science fair today, or maybe how I’m mad at the PTA, but I figure it’s best to get all the really sad stuff off my chest now.

The bad pun’s intended, sort of. These days, it’s all about lungs.

For a while, in our house, it was all about hearts. Sophie had heart surgery twice before she was five. I’m not a religious person, but I looked for messages. The morning of the first surgery, when Sophie was four months old, they put us in an exam room — more like a holding cell — in the surgery prep area at Phoenix Childrens Hospital.

Did you know there’s an entire industry devoted to signage and design in hospitals, and, particularly at childrens hospitals, art? I walked into that tiny room and there on the wall was a drawing of a little girl holding a big, bright red heart.

The tears I’d fought back all morning welled up. I knew who the artist was before I looked: a woman named Rose Johnson, whose work for New Times I liked so much I commissioned her to do the artwork for our wedding program.

It was a sign. So what do the events of the last year mean?

Last May, my dear friend Cheryl broke the news that her longtime companion was in the final stages of lung cancer. In June, my mother-in-law received a similar diagnosis. In August, my grandfather drew his last breath — days later than he should have, because someone had turned the oxygen up too high for a 94-year-old man who was supposed be in hospice.

And in January, Jordan Sterling died. Growing up, I always sort of knew who the Sterlings were — the kids were a little younger, went to different schools, but our moms took ballet together (really) and we had mutual friends. Phoenix is not a large place, at least it wasn’t back then.

When I moved home, I worked for years with Jordan’s stepmother, Terry Greene Sterling, now a very close friend and mentor. So I heard a lot more about the Sterlings. Mostly, I have to admit, about their health. At my wedding, Terry wore a bright red suit and read a lovely, funny piece she’d written about how Ray and I met. (She introduced us.) Then she had to rush off; Jordan was in the hospital again.

There are three Sterling kids. Two were born with cystic fibrosis. I’m honestly not sure how vigilant the testing is these days for the genes that match up and give it to your baby. Thirtysome years ago, I think it was non-existent. So the Sterlings had no idea, til all three kids were born (the eldest is the one who doesn’t have it) that two had it.

Cystic fibrosis is a death sentence. The fact that Brooke and Jordan made it to their mid-30s is a testament to medical science, their families and their own incredible strength. The two took different paths, which I find fascinating. (You can read my friend and former colleague Megan Irwin’s story about the family here: http://www.phoenixnewtimes.com/2006-08-10/news/borrowed-time/)

Despite their disease, both Brooke and Jordan have had amazing lives, filled with friends and adventure, but also focused a lot on health. Brooke is all about the natural — she runs a yoga studio, sees a naturopath, worships her body. Jordan took the medical route: he had a double lung transplant years ago. For a while, it worked. But the anti-rejection drugs shot his kidneys and I don’t more detail than that other than the guy had something like 15 hospitalizations in a year. He died still hoping for a lung/kidney transplant.

At the funeral, I couldn’t look at his mother.

The night Jordan died, Terry left me a voicemail I heard right before bed, and as I tried to go sleep, I couldn’t get the thought out of my head: How could you live with yourself, knowing you’d brought this child — these two children — into the world with this horrible disease that would ultimately, quite literally, smother them?

And then, like a flash of lightning (really, I know it sounds dramatic, but that’s what it was like) I thought, “SOPHIE.”

My — our — situation isn’t so different.

No, Sophie does not have cystic fibrosis. And yes, I know, I’m opening myself up for attack, for daring to question the decision to bring a baby with Down syndrome into the world.

But this is not about her brain. So often, people think that’s all it’s about. What I’m thinking about is her heart. We were so lucky the doctors were able to fix it — twice. There could be a third time. And what about the other risks? Sophie was home the past two days with a fever, and I can’t say I didn’t stare at her yesterday and wonder, “Leukemia?”

(She’s fine today.)

A lot of days I stop and ask myself, “What if I brought this amazing little person into the world and she dies an early, painful death because of my decision (or lack thereof)?”

How could I live with myself?

But really, I think, the bigger question is this: How can anyone ever have a baby and live with all the potential consequencesthat will follow that person around his or her entire life?

Maybe it’s best to take a deep breath and focus on something else, like being mad at the PTA.

In the past week, Annabelle has talked about (and, I’m guessing, thought about) Down syndrome more than she has in her entire 7 and a half years.

The science fair project is due tomorrow (don’t ask if we’re done — though we are finished with Sophie’s rock collection, entitled “Sophie Rocks”) so I’m guessing the conversation will slow after that.

It doesn’t bother me, but it is a little exhausting.

It’s fascinating, watching her process it. I don’t know how the “final report” will turn out for the science fair, but last night Annabelle worked on a drawing — a family portrait — entitled, “Ahh…the life of…Down Syndrum Sister.”

It depicts the four of us, lined up on a ski slope (Annabelle and Ray went for her first time recently). Annabelle’s saying (I’ve corrected spelling here), “Wow! Steep!”, I’m giving her advice (as I don’t ski): “Keep it steady,” and Ray’s warning, “Be careful.” Sophie’s at the end, clearly about to fall, yelling, “Mom! Dad! Help! Help!”

Here’s the drawing:

I gently suggested it might not be appropriate for the science fair. (What IS appropriate? Annabelle wants to include a picture of Sophie. I think it’s ok if it’s not front and center, but tucked away a bit. We’ll see how things fall out tonight.) So she addressed it to Sophie and left it in her room for her.

This morning at breakfast, Annabelle casually mentioned that a lot of “people” (translation: kids at school) think Sophie is a midget. We talked for a while — she said that didn’t bother her at all — and Annabelle read a new kid book on DS (this was the worst so far — the author purports that Down syndrome occurs when you have “an extra gene”) and then Annabelle looked a little exhausted herself. It was clearly time for a break, and she gave herself one.

She and Sophie started tickling each other, cracking themselves up, and Annabelle had one more comment to make on the heavy subject: “She sure is different but she still is ticklish.”

Just yesterday, my boss and I were rolling our eyes over all the writing contests we’re forced to enter each year — that endless search for approval in the subjective world of journalism. (Not so subjective now that you can count web hits — a dangerous direction. I’m fairly certain I have colleagues who sit home and click on their own stories again and again and again in a desperate grab at job security.)

But really, we’re all looking for approval, all the time. It’s why I was so excited last night when I opened Sophie’s backpack, took out her red folder and found a note inside. On the outside of the folded sheet, someone had handwritten Sophie’s name, and “Shhhh — this is a small kid party.”

I opened the birthday invitation, wondering, why would anyone care about keeping the fact that the party’s for little kids a secret? Then I realized, OH — not all the kids in the class are invited. But Sophie is. Someone loves her.

And I know that the little girl having the party does love Sophie. At least, I think she does. These things suck when you stop to think about them. Is the mom just being nice? Either way, I’ll drive the girls the half hour to ballet this Saturday morning, then grab Sophie at the end of her class, wisk her off to the party (another half hour) then back to get Annabelle from her class (another half hour) and back home (you get the picture, at least gas prices are down).

I loved the rush I got when I realized my kid — particularly this kid — was invited to this exclusive gathering. But then came the inevitable questions.

What would it be like to never have those questions? I suppose the very conceited (although even the most self-assured journalists I work with clamor to win contests, acting like they don’t care but occasionally showing their cards) could tell you. And so, I’m guessing, could Sophie. I don’t want to generalize, but isn’t that supposed to be one of the joys of having a developmental disability — not constantly doubting yourself and the world, taking pride in your accomplishments and holding your head high?

The Simple Life. (Not Paris Hilton’s.)

I don’t know. I maintain (and fear) that Sophie will be just smart enough to know she’s not smart enough, and this morning I looked hard at that kid with Down syndrome on that Today Show segment about high school basketball and thought, Man, I hate this story. A lot. The kid filled water bottles for what, 9 years, so they gave him a few minutes on the court — and probably some gimmee shots? Here’s the piece:

“Gosh, I didn’t expect to cry,” a mom said, wiping her eyes as we walked out out of the school cafeteria after the kindergarten holiday show.

“Yeah, I know,” I mumbled, grateful it was dark so she couldn’t see my own dry ones. I actually had expected to tear up, had packed extra Kleenex, but it never happened.

Maybe because I was too apprehensive. Sophie looked worried, too, as she waited on the risers before the concert started. (Once it did start I couldn’t get close enough to get a good picture.) Maybe because the place was so freaking packed you couldn’t move, maybe because I was distracted by the endlessly fascinating task of watching the odd music teacher, or maybe because I feel like an interloper.

That’s it. Interloper. I got the usual phony hello from the principal as I ran Sophie into her classroom, then watched as another teacher had to nudge her (in a not very friendly fashion, I thought) toward her group, when she strayed — just enough that I was likely the only one to notice, but still.

I don’t mean to whine. Sophie rocked it. She mouthed along to the songs, sat up and down when she was supposed to, and didn’t sneeze (a big worry — she’s got a runny nose and I had visions of a “snot alert” from the stage.) Of course, for Sophie all rocking it really meant was that she didn’t bolt from the stage when she saw her family, looking for a hug. Luckily, Annabelle found a spot on the floor right in front of where Sophie was sitting, and (trained from her own kindergarten experience) did the hand movements for Sophie to copy.

But I just couldn’t get past the anxiety and the fluorescent lights and the Flip camera to get a good cry in, and I didn’t realize why til we were walking to the car, just after talking to the weepy mom.

Next year, Sophie might not be in school with that weepy mom’s little girl. She might not have the luxury Annabelle has — of hanging out in second grade with the BFFs she made in kindergarten. Sophie might be held back, or forced to go to another school (if the principal has her way) and flush! There goes the community we’ve been building for her. I’m hesitant to embrace it, for fear it’s an illusion, just as my mom (understandably) worries that Sophie’s not really making any friends.

That so much of this is for show.

Is this kindergarten experience for show, just something to make me feel good? I have evidence to the contrary, I do. I know it. Sophie’s where she should be.

The other day, I wrote about an event (the light parade down Mill Avenue) that exceeded expectations.

So it’s only fair to share the dark side of the weekend. Well, not so dark. But definitely on the darker side of pink.

It seemed like a great idea to take Annabelle, Sophie and their 5 year old cousin Kate to LIbby Lu. If you’ve never heard of Libby Lu (I’ve written about it before — note to self, learn that damn link thing on wordpress) it can best be described as Sparkle Heaven. Or Hell, depending on your perspective.

It’s a hair salon without the cut and wash, a place with a lot of bath products you’d never let your daughter’s you-know-what near. Harmless, I suppose, as long as you stick to the pink glittered high tops and avoid the sluttier options available for your toddler.

It’s one of those places I always swore I’d never take my kids. But after my first foray — on a quiet summer Saturday afternoon with Annabelle and a fellow second grader — I felt confident all the girls could handle it.

Poor Sophie. Poor Amy. From the moment we walked in, Sophie wanted to be in charge — and she couldn’t be. You just can’t let a kid wield the sparkle container, for obvious reasons. From the fight in the changing room to the fight over the wig (don’t ask) to the fight to pick out pink and purple plastic crap that comes along with the package I’d bought each kid, Sophie was loaded for bear. (Is that actually a usable phrase? I’ll have to ask Sarah Palin.) I’m shocked I got a smiling picture.

In the end, only Kate got her nails painted and no one got an updo. They all left in wigs (well, Sophie ditched hers long before we actually walked out, it looked great after being shoved in my purse) and the worst part was when Sophie absolutely refused to remove the tee shirt they gave her to wear for the visit.

I wanted to blame Sophie for her bad behavior, but I had to blame myself. I do think that generally speaking, the best policy is to treat her like any other kid, but watching her at Libby Lu on the day after Thanksgiving, I had to admit that some things are just not Sophie-appropriate. I think even she’d admit it. I hate to use the trendy vernacular, but this was sensory overload, sparkle style.

I’ve given it such a ringing endorsement you’re probably rushing out the door to the mall (really, I do sort of love it — the girls who work there are super nice to the little ones, and really, all that pink is a victimless fashion crime) but if you want to bring your kid to Libby Lu, you better do it soon. Big signs pronounced the entire national chain is going under, closing shop(s) in January.

Big sales on all that pink crap right now, though. And kiddie wigs, complete with hair nets.